ANA: 'Purpose in Life' Not Enhanced With Online Community

But those MS patients who stay with the program may get benefits

Action Points

Note that this small study suggested that, for multiple sclerosis patients, joining an online support community had no significant effect on their sense of purpose in life.

Be aware that the response rates in this survey study were low, which can introduce bias.

Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.

BALTIMORE -- A small study raises questions about the ability of online communities to enhance a sense of "purpose in life" among multiple sclerosis patients -- but there may be subgroups that benefit from participation in virtual communities, researchers suggested here.

Overall, five participants had an overall improvement of 10 points on the Crumbaugh & Maholick's 20 Likert scale question survey that has a possible range of 20-140 points; while five patients had a 10 point or greater decrease in scores -- but 19 patients had no change, said lead author Laura Anzaldi, BS, a 3rd year medical student at John Hopkins University, Baltimore.

However, in discussing her poster presentation at the annual meeting of the American Neurological Association, Anzaldi told MedPage Today that there appeared to be a benefit among individuals who were online for a longer period of time.

"Over time, purpose in life did not change a huge amount until we broke it down to senior users who had been on the site for a long time -- an average of 22.6 months, and new users who had joined the site within 1 months of joining the study," she said. Senior users had an increase in their purpose in life -- an increase from 104.2 points to 108.6 points on Crumbaugh & Maholick's scale, while new users had a decrease in purpose of life, going from a baseline score of 92.53 to 88.2 (P<0.05).

"Purpose in life is a new concept that is mainly used in psychiatry," Anzaldi said. "But it also has a lot of effect in people with neurological disorders. It is a belief that a person's life has purpose -- like having a personal value system, believing that you can create and achieve goals and believing that you can accomplish future challenges.

"There have been a lot of studies over the past 5-10 years," she noted. "These studies have indicated that people who have a purpose in life have lower levels of inflammatory cytokines, have decreased disability and decreased mortality and lower rates of progression to Alzheimer's disease. We wanted to see how people with multiple sclerosis who were involved in a social network seemed to do in improving their purpose in life status."

The people enrolled in the study were members of My Counterpane -- a support group for people affected by multiple sclerosis which allows them to share their experience through photos, text posts and videos. MyCounterpane has more than 1400 users, Anzaldi reported.

"We were surprised that there was a decline in the new users," she said. "We thought that everyone who joined an online community would have a better purpose in life. What we think is happening is that the new users are overwhelmed by other people's comments and experiences and they are either depressed that they are not doing as well as others or depressed that other people are doing so poorly."

The researchers found that response to the program was tepid at best. "They were pretty dismal," Anzaldi said. Only 28.6% of the 67 patients originally enrolled responded; and just 45.8% of the group that filled out more than one survey responded. A few patients from each group were also included in a feedback system that aimed to improve the surveys, but there was not impact among those patients in the feedback loop.

Despite these outcomes, the researchers are continuing the project. "We are collecting data each month," she said.

The invitation to participate was offered to all 1,400 members of the MyCounterpane community; 73 patients consented to participate; 67 individuals completed one survey; 33 completed more than one survey. The researchers reported on outcomes involving 15 new users and 14 senior users, all of whom had been diagnosed with relapsing/remitting multiple sclerosis or secondary progressive multiple sclerosis.

"Studies of purpose in life is not highly common in multiple sclerosis research," said Jennifer Graves, MD, PhD, assistant professor of neurology at the University of California at San Francisco. "The point of this type of work is to demonstrate that there are different approaches to wellness, overall wellness, mental health wellness in patients with chronic illnesses such as multiple sclerosis.

"There are a number of studies in fields related to multiple sclerosis and not related to multiple sclerosis that having a feeling of community and support can enhance wellness, can enhance self-efficacy and enhance health care," Graves told MedPage Today.

She suggested that the finding that long-term users got more out of the community could be related to "the differences those two groups of patients are experiencing. Often when you are first diagnosed with multiple sclerosis there is an adjustment period of knowing that you have a disease and there can be mixed reactions to participating in groups. Whereas people who have had the disease longer or have participated in this type of support longer may experience more benefit."

Accessibility Statement

At MedPage Today, we are committed to ensuring that individuals with disabilities can access all of the content offered by MedPage Today through our website and other properties. If you are having trouble accessing www.medpagetoday.com, MedPageToday's mobile apps, please email legal@ziffdavis.com for assistance. Please put "ADA Inquiry" in the subject line of your email.